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-   -   getting a SCS (https://www.neurotalk.org/scs-and-pain-pumps/156769-getting-scs.html)

anon21816 09-09-2011 01:03 PM

Emily and PatriciaB
 
Hi Emily and PatriciaB, so nice to see more Irish people on this forum :)

I am based in Dublin and Ive had such a good Consultant since my back problem raised its ugly head 6 and a half years ago:rolleyes:....I have failed Back Syndrome, basically Ive had trouble from the outset with a Discetomy first followed by 2 Spinal Fusion between L4/L5 and L5/S1 , these were supposed to make me feel better! I wish, if anything it was worse and in the end I had to have the metal removed as it was causing me more pain also. So I am left with neuropathic pain down both legs, which as a matter of fact originally was in my right side but has now made my left side worse!!! and its moreso the left side that I have been addressing, except the pain radiates down my right leg too:confused: Eventually my Spinal Consultant suggested Pain Management. At this stage I was feeling like a horse put out to pasture.....

But after 2 years and a lot procedures inbetween I ended up with the SCS. It is very good for the pain in my legs but cant say the same for my lower back! But I will say , I have it a year since August, I definitely feel more 'relaxed' especially when Im lying down. I cant sit for too long and thats something that the SCS doesnt address. But it has been remarked that I dont have that 'drawn' look as much as I used to. I havent gone off all meds as I just cant function properly if I do as the pain is still there. The SCS does 'mask' the pain I have but I do feel it there all the time, but its more 'bearable' I suppose!!......

I hope you both have the trial and that you will both benefit from it.....

Good luck with your visit Emily with your Specialist and I do hope that you will get all the video's and literature that goes with the SCS.

Mine incidently is St Judes Eon Ans Stimulator. They are based in the UK, well thats where the Reps come from but the actual company originates in Texas.


If you have any questions please dont hesitate to ask.......

Btw where are you both from, I will understand if you dont want to say.....

Take care

Jackie :)

PatriciaB 09-09-2011 02:50 PM

Hi Jackiey,
I am from Cork. Up the Rebels!!!! For the last 2 years I have been attending a wonderful consultant. He is the nicest doctor I have ever come across, Last October when my condition worsened he asked me to go to Dublin for a 2nd opinion. I saw this consultant in November. I nearly died when he recommended a SCS. It has taken me a long time to accept it. My biggest concern is the recovery time post surgery. Mark's term BLAST is most apt. My wonderful Mam lives with me. She is 91. She is so worried about what lies ahead.

I have not worked since January.I miss it so much. My work involed a lot of standing. My doctors have told me that I can never again work because of my significant lower extremity disabilities. I never imagined a life of chronic pain bit it is the hand I have been dealt and I am merely trying to cope. At least in this forum we all understand what each of us is going through. It is great to have such empathy and support.

Take care,
Patricia

Rrae 09-09-2011 03:12 PM

Quote:

Originally Posted by PatriciaB (Post 803882)
Remember that the darkest hour is before the dawn.

I really like that quote, Patricia!

It is very exciting to have you both join us at the same time even!
Isn't it so amazing how the internet can connect us from all over the world :grouphug:

Everyone here speaks wisdom....
Yes, the trial is SO crucial. The most important part of the trial is good communication between you and the medical team. I can't stress enuf how vital it is to communicate precisely to the doctor where you are feeling the stimulation when they are implanting the trial.
Nothing to 'fear'..... just be 'aware'. The tricky part is the fact that you'll be in a 'twilight daze' while undergoing the trial, so do your best to keep your barings so that you can communicate to the team as they insert the lead wire. It can literally make the difference in having a successful outcome.

It's a very exciting prospect knowing that you can potentially have a much better quality of life!
I'm excited for you both...

As far as my unit, I'm very happy with it. My pain issues are very similar to Jackie's. The soothing sensation in my legs is a welcome relief from the horrendous burning pain I had prior. I usually tell people that my unit covers about 75% of my pain. Most Dr's won't guarantee more than 50% relief. But hey, ANYthing is better than nothing, yes?

Keep us posted every step of the way, ok!

:hug: Rae :hug:

JoanB 09-10-2011 08:30 AM

To answer your question about peoples' experiences here emily, I haven't even started the process yet--my doctor just brought it up as something to consider. So I came here to learn about it, and this is a great place to do that, as long as you don't listen to anything that I say.;)

anon21816 09-11-2011 09:07 AM

Hi Patricia :)

Well Im from Dublin ;)so roll on NEXT SUNDAY!!!

I can understand your worries about time especially when you have your mum to take care of also. It is definitely a worry for you. I know it takes at least 8 weeks post surgery in order to let the leads scar in and also to get back to some kind of normality. Its vital that you listen to your Dr's when he advises you on what you can and cant do.

I used to work in the bank and unfortunately I had to give that up as I couldnt do my work properly. So after 'thinking' about it for over 5 years I eventually had to take early retirement. It was the hardest decision of my life. I missed the social side of work and meeting people. All of a sudden I was stuck at home when my family had grown up and all but one was left at home. This should have been a time for me to enjoy the 'freedom' of the kids flying the nest!!! and have loads of time to myself and to enjoy myself, but unfortunately, that wasnt the case. My condition put a stop to that. And so it took that long for me to accept that I had to give up my job and that I wasnt going to be able to get back to the life I had before and to just accept what I have and be thankful for that. :)

Its true this forum is fantastic and you get so much information here and from all different angles!!!

I hope it all works out well for you Patricia I really do!

take care

Jackie:hug:





Quote:

Originally Posted by PatriciaB (Post 803912)
Hi Jackiey,
I am from Cork. Up the Rebels!!!! For the last 2 years I have been attending a wonderful consultant. He is the nicest doctor I have ever come across, Last October when my condition worsened he asked me to go to Dublin for a 2nd opinion. I saw this consultant in November. I nearly died when he recommended a SCS. It has taken me a long time to accept it. My biggest concern is the recovery time post surgery. Mark's term BLAST is most apt. My wonderful Mam lives with me. She is 91. She is so worried about what lies ahead.

I have not worked since January.I miss it so much. My work involed a lot of standing. My doctors have told me that I can never again work because of my significant lower extremity disabilities. I never imagined a life of chronic pain bit it is the hand I have been dealt and I am merely trying to cope. At least in this forum we all understand what each of us is going through. It is great to have such empathy and support.

Take care,
Patricia


pwdavis1 10-30-2011 09:16 PM

I am new member in search of info as all are
 
i have pain at the 6-10 level 5-6 days a week in my lower left quadrant. Have had this for 10 years now and have been off work for 5 months now trying to move forward. just rec'd approval for temp. medtronic implant on Nov 1. Any help appreciated. I wish you all the best and will try to post info on my results as they come along. Thank you

Mark56 10-31-2011 01:14 AM

PW Hoping for you the BEST
 
Soon you will be in Trial of your new possible method at pain management. For me, I knew the MOMENT that sweet program began to interrupt my pain signals we had a SOLD one more!

For you, I certainly hope and pray the best,
Mark56:grouphug:

Ananimity 10-31-2011 01:46 PM

Hi Emily
 
So glad you found this forum. People here are so helpful and supportive. :)

Sophie_ 10-31-2011 06:09 PM

Welcome Emily :)
 
Hi Emily,

You're very welcome to our site and all of us will be more than happy to help you through to your decision and afterwards too.
I'm Sinéad, I'm from KE. 37 going on 97!*I have chronic back pain, failed back surgery, failed SCS surgery, sacro illiacitis (sp) neuropathic pain and I feel crap, I'm always in pain.*
You've already heard that my Dr has decided to remove my Medtronic SCS and this is because it's not working for me and everyone is different so what might not work for me doesn't mean that it won't work for you. In saying that I would advise anyone to consider carefully an alternative, for the simple reason it might not be for you and some SCS's you don't feel them, there is no buzzing sensation and why would you want the buzzing if it wasn't necessary.

I'd love to know more about you, PM me if you would like to share but don't want to put it on here, please feel free to read mine too. How old are you, where are you from?*
My*Dr is Declan O'Keeffe in St Vincent's and fantastic at what he does but pinning him down and getting him to make a decision where he won't change his mind is next to impossible.*
Who is the Pain doctor you have been referred to? I know most of them in the Dublin region at this stage-at least I think so. I don't know Jackie's Dr in the Mater and she has a St. Jude's SCS, she too absolutely loves her Dr.

Tomorrow I'm scheduled to have Sacro illiac joint injection and some nerve blocks. I'm also scheduled to have my SCS out or it will be revised and removed later.

I'm nervous like you wld expect *but I'm ok.

I'm looking forward to getting to know you and we're a good bunch here, we like to have the crack as well as the serious stuff.

Chat soon

Sinéad*xxxxx :hug::grouphug:*:hug::grouphug:*:hug::grouphug:

Rrae 11-01-2011 07:19 PM

Welcome aboard!
 
Quote:

Originally Posted by pwdavis1 (Post 820172)
i have pain at the 6-10 level 5-6 days a week in my lower left quadrant. Have had this for 10 years now and have been off work for 5 months now trying to move forward. just rec'd approval for temp. medtronic implant on Nov 1. Any help appreciated. I wish you all the best and will try to post info on my results as they come along. Thank you

As you can see, everyone here is very caring. It's amazing how we all look out for each other, like one big family. :grouphug:
I read on another thread that you are getting Medtronic. Count me among the peeps who absolutely love it, but like Sinead said, it works for some and others not. It's certainly quite a commitment but you sound like a perfect candidate. Your pain is robbing you of a quality of life.

Feel free to start a new thread of your own, that way you'll have it to look back on and we can follow along with you as you go thru the process.
To start a thread, just exit out of this one and then you'll see 'new thread' option at the top/left of the page.

It's great to have you!
Rae
:grouphug:


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